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Month: April 2011

I could hear the girls giggling in the hallway, trying so hard to be quiet like I had asked them to be at least three times. A smile spread across my face as I heard them whispering to each other – communicating as only little girls know how to do. Knowing that within a matter of seconds I would be sticking my head out into the hallway again to remind them to be quiet. That other children nearby needed their rest.

Two little girls playing together. Trading secrets with each other. Giggling about boys and butterflies and whatever else strikes their fancy. Normal things. From my vantage point behind the door, one would believe all was well. These girls were not out of the ordinary. With only the sense of hearing, one could easily recognize the sound of young feet running up and down the hallway or when the audible threshold was in danger of being thrown over for a fit of hysterical laughter.

It’s a good day for her. Not my kiddo, the other one. Without any other senses you couldn’t see that she was bald. That there was a chunk of her skull missing. That she had tubes leading to an area in her chest. That she carried a bag full of medicine to hopefully make her well.

That her giggling days are few and far between.

Usually, she sits in a wheelchair. The pain in her feet makes it unbearable to put any pressure on them. Her complexion sallow thanks to all the chemotherapy coursing through her veins. A yellow bucket sitting in her lap just in case she got sick. She nearly always gets sick.

Yes. Today was a blessed day. I’m so glad my daughter got to play with her – afford her a little levity during her tumultuous storm of therapy. Run up and down the halls with her and giggle until they got out of control. I tried hard to make my voice sound stern enough to get them to settle down but have to admit that my heart soared when they were in the full throes of a giggle fit.

I hope she doesn’t fade away into the shadows. I hope we don’t lose her like we’ve lost so many others. I hope that someday her everyday can be full of kittens and rainbows and boys… and whatever else strikes her fancy.

Darn it. The one day that I’m allowed to shirk housework and here I am in NYC doing the antibody gig with Ben. Oh well. I’m sure I’ll take a raincheck and celebrate it when I get back to Denver. Housework is a total drag.

Not that being in NYC is much better. This is round seven of antibody therapy. Or is it round eight? I’ve lost track. Wait. What day is it? Heck, I’m not quite sure what year it is. I feel so lost in the shuffle of everything that is happening around me that I can’t grasp my immediate surroundings. All I’m sure of is that Ben is doing day four of antibody therapy, which means there’s only one more to go. Whew. Round seven – or eight – will be done.

Monday was bad. Ben screamed during initial therapy (which is the norm on Mondays), while Madeline played in the hospital’s play room. She crafted and watched movies as Ben was tortured with his painful treatment. After a long sleep, we went back to the Ronald. Ben slept peacefully for a while but then woke up needing to vomit. He didn’t make it to any receptacle. Now, this has happened plenty during Ben’s therapy, but I have to say that I’ve never quite gotten used to cleaning up vomit. Especially chemo vomit. Yes, it’s different. It’s not like anything you’ve ever seen or smelled, unless you’re a cancer parent or health care professional.

So, as I was trying to clean up Ben’s streak of green goo, he started crying out in pain. This usually means that he needs a heat pack applied to his stomach, back or feet, and he needs it STAT! I was furiously trying to clean off my hands and tend to him. Since I was briefly incapacitated, Madeline figured she would be helpful and get out a heat pack for her brother.

These heat packs are difficult to get started – you have to “pop” them to activate the heating agent. I’m supposing the liquid in the enclosed baggie opens and mixes with something that makes it heat up. I’m not sure how the science stuff of it works, all I know is that we go through a tremendous amount of them the week of Ben’s therapy. I’ve gotten to the point where I can pop them with one hand, but it’s not the easiest feat. Well, Madeline, bless her heart, was trying and trying to pop the pack because I couldn’t get there fast enough. She couldn’t do it with her hands so she tried with her feet. Yes, her feet. She placed the heat pack on the floor and jumped on it with all her might. I came out of the bathroom just in time to get sprayed with a projection of what I was hoping to be NON-TOXIC, coarse, salt-like goop. First puke, now this. I was ready to cry but could only laugh. Hysterically. Mixed with a little hyperventilation.

So, what I always do when faced with something I can’t deal with, I covered up the mess with a blanket and decided that I would deal with it later. Much later. Unfortunately, by the time I got to it, it was as hard as a rock. I figured that I’d be paying the Ronald a pretty penny to replace the carpet since the aftermath of both puke and (what I learned was, indeed, non-toxic) cement-like goo had caused some serious damage.

I spent a good chunk of yesterday lying on the floor and trying to scrape off the hardened goo with my debit card, which was completely fruitless. So, I covered it back up. This time I used a wet towel and debated whether or not if I should do the walk of shame down to the front desk to tell them what we had done. I envisioned us being banned from the Ronald for good. My daydream went as far as to include being carted away by Ronald himself. Oh, the shame of being deported from our sanctuary by a clown.

Before I decided to go rat us out to the Powers That Be, I lifted the towel to reassess the damage. I was stunned to see that the water had dissolved the hardened cement! YAY! I got more towels and laid them down before leaving for today’s antibody treatment. I’m hoping that everything is back to normal by the time we get back to our room today. Whew. Thank you, Lord, for water. That was a close call.

Besides this bit of excitement, we’ve tried to have some fun in cold, rainy New York City. My sister, her children, and my dad came into the city over the weekend for Madeline’s birthday. My sweet little baby turned seven on Sunday! She woke up on her special day to an “Oscar” award stating that she was the World’s Greatest Daughter, which she absolutely loved. My sister took her to get her nails done. We took a bus ride around the lower part of Manhattan. We saw Greenwich Village, Soho, Ground Zero, Battery Park and the Statue of Liberty, Chinatown, etc… a lot of spots that I hadn’t seen yet. It was fun. After my family left, the kids and I went to see Wicked. Madeline LOVED it. I think, overall, it was a very special birthday.

The dynamic of having Madeline here brings a bit of normalcy to the antibody experience for Ben. She gets to see that Ben is NOT running to NYC every eight weeks so he can skip school and have fun in the Big City with mom. She sees first hand the hell that he goes through. She sees that there are other siblings – like her – who are thrust into the maniacal shuffle of a world called “Cancer”. She’s not alone. She’s good at making friends with these kiddos. She can see past the missing limbs, vicious scars, and lack of hair. She’s not bothered by the IV’s or bags of medicine that they have to pull around with them. In fact, she sometimes struggles with the fact that you have to be EXTRA careful around the tubes and IV’s. They are attached to these kiddos. It’s the one aspect that makes me extremely nervous when she’s playing with them.

I was chatting with a dear friend last night – one I should speak to every day that I’m feeling as depressed as I was yesterday. As she answered my call we were already laughing with each other before a single word was said. I told her about Madeline being a bit of a “bull in a china shop” around the IV’s and such and she said “Like the Nun from the movie “Airplane?” I howled with laughter and started my rousing rendition of “There is only one River”. If you haven’t seen this scene it’s worth a look. It describes my Madeline with great accuracy. 🙂 Thanks, Joyce, for the laugh. I’m still chuckling over that one!

Ugh. I need to run. Ben is struggling. His heart rate is through the roof and I just know he’s going to be crying out for a heat pack any minute.